DSCC provides memory booklet for children and families to complete together during the pandemic.

From school closings to parents suddenly working from home, the coronavirus (COVID-19) pandemic has drastically changed Illinois families’ way of life over the last two months.

To help children express themselves and record their experiences during the Stay at Home Order, we’ve created our own COVID-19 Memory Book that families can print out and complete.

The book includes an “About Me” section for children and youth to fill out as well as their favorite ways to stay busy, what they are thankful for, how they’ve stayed connected with others and a list of celebrations that happened during social distancing. There’s also a page for children to fill out if they celebrated a birthday during the pandemic.

The back page includes information about the COVID-19 resources compiled by the Univesity of Illinois at Chicago’s Division of Specialized Care for Children (DSCC). The resources include links to more at-home learning opportunities and activity resources for families.

Click on the COVID-19 Memory Book link to print the PDF.

The book is also available in Spanish.

The Johnson family donated 160 Easter baskets for children at Central DuPage Hospital, surpassing their goal despite the coronavirus outbreak

Andrea Stambaugh vividly recalls the disappointment she felt when her son, Axel Johnson, was in the pediatric intensive care unit on Easter weekend 2018. 

There would be no coloring eggs, Easter egg hunts, or other favorite family celebrations.

“I was feeling like a failure because I didn’t have an Easter basket beautifully wrapped and thoughtfully hidden here for Axel to see on Easter morning,” Andrea wrote on her Facebook page, “Axel’s Journey with CMV.” “Then, as the lights turned down in the hallway and it grew quiet, I heard a family in the hallway praying. Praying not for Easter baskets and a chance to color eggs, but for life.”

The moment immediately changed her perspective. Andrea vowed to offer love and support to such families who can’t be home making memories with their children.

For the last two years, the Johnsons have collected donations to fill Easter baskets for hospitalized children. Despite unexpected challenges from the coronavirus outbreak, the family surpassed this year’s goal and delivered 160 Easter baskets to Central DuPage Hospital in Winfield.

“We know the burden and the mom guilt that people feel when they can’t provide their kid a proper holiday. We know that that’s a lot of stress and a lot of burden and frankly, the families are dealing with a lot of other things if they’re in the hospital,” Andrea said. “They shouldn’t have to feel that pressure, so we’re here to make sure that’s relieved from them and that they can focus on healing for their child.”

Axel is 3 years old and a participant in the University of Illinois at Chicago’s Division of Specialized Care for Children program.

After his Easter hospitalization, Andrea researched information from other organizations who coordinate Easter basket donations. She put together a list of suggested items, including coloring books, puzzles, dolls and action figures. She then asked her page followers for donations.

The Johnsons hoped to collect enough items for 25 baskets for Easter 2019. Donations far exceeded this goal. A team of volunteers helped them put together a total of 125 baskets for children at multiple Chicago-area hospitals.

This year, the Johnsons aimed to donate 150 baskets. They set up an Amazon wish list for Easter basket items, and donations started to pour in. But challenges soon arose as the coronavirus outbreak escalated. For safety reasons, two hospitals could no longer accept donations for patients.

Central DuPage Hospital could accept the baskets if the Johnsons followed strict safety precautions.

“We have an immunocompromised child, so we know about the importance of keeping the children and the families safe during this time,” Andrea said.

Every Easter basket item was purchased new and cleaned with bleach spray or a sanitizing wipe. Andrea and her partner, Adam Johnson, wore gloves and masks while sorting the items and wrapping the baskets with cellophane and personalized notes.

Due to the pandemic’s social distancing requirements, Andrea and Adam spent 16 hours packaging 160 baskets without their usual team of volunteers.

Last weekend, they delivered the baskets to Central DuPage Hospital in Winfield to be ready for patients on Easter Sunday.

“It makes our hearts really happy every year when we get to see the finished product and all of the kids that will be blessed this Easter,” Andrea said.

The family is also already planning to provide baskets to more hospitals next Easter.

For more information about their project and Axel’s condition, visit “Axel’s Journey with CMV” on Facebook.

Instructions for safely cleaning and re-using supplies for technology-dependent children.

Adequate medical supplies are essential for families caring for children who are medically fragile and technology-dependent at home.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) wants to make sure our participant families can keep their supplies properly stocked through the coronavirus disease 2019 (COVID-19) outbreak.

We’ve compiled guidance and instructions to help families safely clean and re-use supplies in case there’s a future shortage. *Please note you should check with your child’s care team to make sure these guidelines are appropriate for your child.

The DSCC Guidance on Home Medical Supplies includes instructions for cleaning and re-using:

• Feeding supplies
• Suction supplies
• Tracheostomy supplies
• Ventilator equipment
• Nebulizer equipment

*Again, please check with your child’s care team to make sure these guidelines are appropriate for your child.

The guidance is available on our Home Care Information and Resources page as well as in our list of COVID-19 resources and supports for families.  

Our Care Coordinators are also available to discuss strategies and help you become prepared and well-equipped for your child’s care in the weeks and months ahead.

Please reach out to your local regional office or call us at (800) 322-3722.

The Illinois Department of Public Health gives recommended guidance for preventing the spread of COVID-19 in medically fragile children.

The Illinois Department of Public Health has provided guidance for how to prevent the spread of the coronavirus disease 2019 (COVID-19) in medically fragile children.

The guidance includes:

• Planning actions for the home healthcare agency during a disease pandemic
• Preventative actions for the introduction of respiratory germs into your home
• Preventative actions for the introduction of respiratory germs within your home
• Preventative actions for vulnerable populations
• Contingency planning

The guidance is available in our COVID-19 resource list and at this direct link to the guidance document.

Meals, financial help, health tips, condition-specific information, learning tools and more to support families of children with special healthcare needs.

Parents and caregivers have a lot to juggle as they care for a child with special healthcare needs amid the coronavirus disease 2019 (COVID-19) outbreak.

The uncertainty and required social distancing can pose unique challenges, questions and concerns.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC)’s team of professionals is here to help.

We’ve compiled a list of resources to help families find the right support: https://dscc.uic.edu/browse-resources/covid-resources/.

The list includes places offering free meals, utility assistance, free Wi-Fi, health tips, educational websites, activities during social distancing and condition-specific information.

Resources are also broken down by our regional office locations.

We’ll continue to update this list as new resources become available. Please check back often for the latest information.

If you have a resource to add to our list, please email us at dscc@uic.edu.

We’re here to help participants and their families plan and take the proper precautions with their medical supplies during the COVID-19 outbreak.

Many families enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) rely on medical supplies for their child’s care.

Now is a good time to plan for how to keep your supplies properly stocked through the current coronavirus disease 2019 (COVID-19) outbreak.

We suggest you reach out to your child’s medical provider about how to safely reuse and/or make supplies last longer. This information can help you act in the best interest of your child in case there’s a need to conserve medical supplies in the future.

We also recommend asking your provider about getting extra necessary medications to have on hand or using a mail-order option.

Your DSCC Care Coordinator is also available to discuss strategies and help you feel prepared and well-equipped for your child’s care in the weeks and months ahead.

Please reach out to your local regional office or call us at (800) 322-3722.

DSCC taking steps to protect our participants, their caregivers and our staff, including suspended home visits and limiting office visitors.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) has an important update about the coronavirus disease 2019 (COVID-19) pandemic. 

We want you to be aware of some p​recautions we are taking to protect our program participants, their families/caregivers and our DSCC team.   

We are limiting visitors in our office until the guidance changes.  We feel this step is necessary to protect the participants of our program and our staff.

If you arrive at one of our offices, you will be asked to call to tell us more about how we can help you.  

We are also suspending home visits or other face-to-face visits until the current situation improves. 

DSCC Regional Offices plan to remain open.  If we have to close an office, we will still have staff available through our other DSCC locations who can help you get the care you need. 

Since the guidance on ways to slow the spread of coronavirus is evolving, please watch our website for continued updates.  

Our DSCC team remains committed to our mission to partner with Illinois families and communities to help children and youth with special healthcare needs connect to the services and resources they need.

We appreciate your patience and understanding as we all do our part to help slow the spread of the coronavirus.  

Be well!